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Canada: Chronic disease expert at pioneer BC women's clinic leaves abruptly

Discussion in 'General ME/CFS News' started by Firestormm, May 22, 2014.

  1. Firestormm

    Firestormm Guest

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    barbc56, beaker, merylg and 2 others like this.
  2. Firestormm

    Firestormm Guest

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    Bean counters at work again :devil:
  3. Esther12

    Esther12 Senior Member

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    TBH, the way the govt spoke about this clinic always sounded dodgy to me. A couple of patients who visited said I was wrong to be concerned, and it was just a hunch... but... I still have a concern that this clinic could end up being worse than nothing.
    barbc56, merylg and Valentijn like this.
  4. Aileen

    Aileen Senior Member

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    I am afraid the only way we are going to get a proper clinic like the one Dr. Bested was attempting to provide is if it is private. Something along the lines of what KDM has going. From what patients have described here on PR, it sounds like he has managed to combine thorough care with time for patients with efficiency. Perhaps a private clinic run by Dr. Bested, with help from KDM to get it set up would be good for us.

    Perhaps some things could be funded through the provincial healthcare system to reduce the cost to patients. For example, lab tests that are usually paid for under the provincial plan. Scans if necessary. Heart testing. They have a very specific list of what they pay a doctor for and the price. Even if they paid the usual amount for a normal doctor visit, at least that amount could be deducted from the price charged to patients?

    A government-funded clinic will not work because the healthcare system revolves around the needs people had when it was originally established. The typical problems then were broken bones, diseases that most children today are vaccinated against, pregnancy and baby checks. It didn't take a 3 hour appointment to diagnose mumps. People did not usually live into their 80's and 90's. The current situation is vastly different. The whole system needs a complete overhaul.
    merylg likes this.
  5. Valentijn

    Valentijn Activity Level: 3

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    Yes, their concern is about costs and appointment lengths. That means 1) little or no testing coming soon, 2) cheap treatments like a CBT/GET/sleep hygiene handbook, 3) non-doctor therapists doing most of the "treating", and 4) very short doctor appointments at intake and no other contact with the doctor.

    They won't care that it results in 0 improvement and a good risk of deterioration - it's the cheaper route and they can justify it based on dishonest research abstracts out of England. While still crowing about how great it is that there's treatment for ME available now :mad:
  6. alex3619

    alex3619 Senior Member

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    In case anyone is wondering about the bean counter comments or the risk of the service becoming useless, read this quote from the newspaper link:

    When will they understand that simply seeing patients with complex problems does not advance their care or improve the quality of that care. It takes time to even begin to understand the complex.
    beaker, merylg, Valentijn and 3 others like this.
  7. barbc56

    barbc56 Senior Member

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    I'm sure this doesn't apply to all privately owned clinics but they can get away with using treatments that are questionable.

    There are very few private clinics I have read about that I would go to. But that's me.

    Frankly, IMHO, the money used for these clinics could be put to better uses such as research. High calibar research.

    Barb
  8. TigerLilea

    TigerLilea Senior Member

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    Dr. Alison Bested wasn't just diagnosing patients, but was also doing research. Her plan was to collect and save blood and tissue samples for research in the future. This is a real loss for our province. I don't think that when the government set up this clinic that they had any idea what was going to be involved with treating CFS, FM, and Lyme patients. If they had really bothered to research her and her clinic back east in Ontario they would have realized what was going to be involved in setting up a clinic here.
  9. TigerLilea

    TigerLilea Senior Member

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    I don't agree with what you are saying. I've had CFS for over 23 years and CBT/GET has never been mentioned to me before by any of my doctors that I have seen here in Metro Vancouver. I think that this "cheap treatment" is much more common in Europe.
  10. Kati

    Kati Patient in training

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    @TigerLilea CBT was the main treatment at the Complex chronic disease clinic. They wanted to enroll everybody in their 'education/support' groups. That was CBt in disguise. Self-management program is CBT.

    Moreover she was interested in pushing her holistic agenda. Naturopath on staff is never seen for a provincial program. She made 2public appearances in where she was making a sales pitch on her book, the latest one was to cure yourself of fibromyalgia the natural way, from recipes from her cookbook.

    Patients in British Columbia need comprehensive bieomedical based care. Not fluff.
  11. Aileen

    Aileen Senior Member

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    Kati, I didn't know that was happening. :( In a country the size of Canada, you'd think there was one doctor capable of running this type of clinic! We need to send some intelligent young doctors to do extra training with a top ME/FM doctor at an established clinic. Not sure if we even have such people though.

    We need a group of medical detectives that can really solve these diagnostic dilemmas. There are a lot of complex, chronic messes out there. They need to start training doctors especially for that. A new specialty.

    Here in Ontario, they finally figured out that doctors need different training in order to work in remote regions. No large hospitals with lots of fancy scans etc. Different skill set. Now we have a new med school in the north of the province that focuses on just that. Training doctors to work in our north and sparsely populated regions, rural areas.

    We need a similar approach with complex diseases.
    Mij likes this.
  12. TigerLilea

    TigerLilea Senior Member

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    Really?? That is disappointing to hear. When I first heard about her coming to Vancouver there was no mention of that. I purchased her book but am not interested in reading it if this is her idea of treating CFS. :depressed:
  13. alex3619

    alex3619 Senior Member

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    Are there any links showing this stuff? Its important to know about. CBT by stealth is a worry everywhere. Mind you it depends on the kind of CBT. UK style we-can-cure-you CBT is much more dangerous than CBT aimed at coping skills.
    lizteva and ggingues like this.
  14. Kati

    Kati Patient in training

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    It was known in Toronto that patients who wanted to see her needed to see her naturopath (which cost money). For Canada, this is not in the spirit of universal health care. She also built her program in Toronto calling it "Environmental health clinic". What part of environment health is ME? Because if you think about it, HIV would definitely be environmental since it comes from monkeys. This has stigmatized patients further.

    @alex3619
    I have a couple links for you, and I have a recording from the opening ceremony of the clinic last year but it's not in a format that I think I can share eassily.

    The clinic's website
    http://www.bcwomens.ca/Services/Hea...disease-program/Myalgic Encephalomyelitis.htm

    Her book promo on provincial tv: 'you are what you eat'-really???
    http://globalnews.ca/video/1154341/fibromyalgia-guide/

    Pain BC radio show (she avoided answering how attending IACFSME 2014 would change clinical practice)
    http://www.blogtalkradio.com/painwa...hronic-fatigue-syndrome-with-dr-alison-bested

    Will work on my recording of the opening ceremonies where she asked patients for autopsies.
  15. alex3619

    alex3619 Senior Member

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    From the painwaves radio link, Bested is talking of CBT for assisting with coping skills, and especially grieving, not treating the illness.
    SOC, TigerLilea and Valentijn like this.
  16. lizteva

    lizteva

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    Kati, I think the way you're framing the clinic offerings is misleading.

    Yes, Dr. Bested created support groups to help people learn self-management and, it's true, one of the tools she offered people was CBT, but NOT Wesley style CBT that presumes patients have a false belief that they are ill and just need to change their beliefs to get better. And she absolutely did not do this by stealth--she was quite clear at her first talk given to the MEFM Society of BC that CBT was one of the tools she would use. I asked her why she would use something that has been so damaging to patients and she clarified that the CBT she used was not the kind that was used to blame patients, bully them back to work or out of insurance claims or that denied the biological nature of their illness. And you could she was quite angry about the way in which CBT has been used against patients in the past.

    I agree with Alex3619 it depends on the kind of CBT. From what I understood, Dr. Bested used it in the way it is used for many other chronic illnesses such as MS, Heart Disease and other diseases that are biological (not psychological) because adjusting to debilitating physical illnesses has a big psychological effect. Some people, when faced with the reality and probability of being sick for the rest of their lives can get into very unhelpful thinking around their illness--e.g. that it's the end of their life, or that if they don't get back to their pre-illness functioning they can never be happy, or that they just have to keep pushing and fighting against their symptoms instead of using them as a guide for how they now need to change their lives and limit their activities. Examining these thoughts can be very useful and lead to better acceptance of our illnesses and also to better management of illness. It's hard to manage your illness well if you're still in denial of its severity and true impact on your life and/or are engaging in magical thinking--that you're going to get better any day now or that the next supplement/treatment/technique you try is going to be the one to make you better.

    I do, though, wish doctors in this field would recognize how triggering even the use of the term CBT is for patients--there's too much chance of misunderstanding of what kind of CBT is being applied, and if a well-known doctor like Dr. Bested says she uses CBT, it can reinforce the use of harmful forms of CBT by other doctors. Even if she explains how she's using it and how it's different from that used in the PACE trial or even the kind promoted on the healthlink.bc website, those details get lost and the message that gets through is that CBT is useful and appropriate for patients with ME/CFS. The reality is that it's only useful when used in a particular way (to help patients cope with the illness and better apply self-management techniques like pacing, sleep hygiene, etc.) and, furthermore, that it's not useful for all patients, either because they are already coping well with the transition from health to illness or because other psychological tools (support groups, grief counselling, etc.) are more helpful to them to process what they're going through.
    Sidereal, Snowdrop, Cheshire and 3 others like this.
  17. lizteva

    lizteva

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    I also think the value of the service that was offered by the clinic has been skewed here.

    Kati, maybe you were able to get a diagnosis or self-diagnose and self-educate so what the clinic had to offer was nothing new to you and therefore disappointing, but many patients are not in the same position. Many don't know what they have, can't get diagnosed, worry they are misdiagnosed and actually have cancer or a brain tumor, and don't have a clue what to do to help themselves. I've also talked to many people who went to the clinic who already knew what they had and knew about pacing and self-management but still felt more validated being seen by an expert than by their GP who knew less about the illness than they did.

    My understanding of the initial goal of the clinic was some very basic stuff that many patients could not access:
    -proper diagnosis, including identifying those who have been misdiagnosed and actually have illnesses for which there are treatments. Proper diagnosis helps many patients access insurance benefits among other things
    -training and educating other doctors around the province
    -creating a protocol of diagnosis and treatment for the rest of the doctors in BC to follow so everyone's giving the same advice to patients (not telling patients to exercise more or to just wait and see what happens, or not educating patients on how to get out of a push/crash cycle that leads to worsening health)
    -research was always part of the plan too, but the clinical care had to be set up first.

    And yes, right now, the "treatment" available is just self-management and pacing, etc. but really what else is there out there that is proven in evidence based research? If there was something we'd all just skip the medical system, cash in our life savings, get treated and get better. Yes, it's atrocious that the research and available treatment is so far behind and we know there are many groups to blame for that (CDC, Wesley Group, etc.), but that's not Dr. Bested's fault and a clinic is not the level where experimentation can go on--aside from being prohibitively expensive, it's also unethical.

    If anyone read the follow up article in the Vancouver Sun (link below) I'm sure you saw how many patients support Dr. Bested and what she was doing. No she didn't have new solutions or experimental drugs for us to try but she was extremely knowledgeable about ME/CFS, FM, Lyme Disease and MCS, was up on all the latest research and had no question in her mind over the biological nature of these illnesses and would stand up to anybody who said otherwise. After years of people not finding a doctor who knows anything about these illnesses or even believes they exist, and/or gives advise that is actually harmful to patients, Dr. Bested was a vast improvement. And, honestly, to me, that's a step forward and I'll take it. If we only accept the top of the mountain as an acceptable solution, we're never going to take the first step that will get us to the top of the mountain. What we have now that she's left, is a step backwards as her position is filled by two obstetricians who really have no experience in this field at all.

    http://blogs.vancouversun.com/2014/...-at-vancouver-complex-chronic-disease-clinic/
    TigerLilea likes this.
  18. Aileen

    Aileen Senior Member

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    I think we need to come up with a name for this. CBT isn't the right term. It is just a way of helping patients accept the new reality. That can be very hard. It's not the psychobabble CBT.

    You don't want people to be like the terminal cancer patient who has failed all known therapies but refuses to accept it. The ones who travel the world trying the various miracle cures offered by dodgy characters in third world countries. They spend all their money and lose the precious last months with their loved ones. :(
    lizteva likes this.
  19. Kati

    Kati Patient in training

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    @lizteva, it may be your opinion, however my experience has been Dr bested was all "meditation and naturopath". i am nsorry but this is not practicing medicine.

    i am one who has been traumatized by the way I have been treated at the clinic, and how 2 major diagnosis have been left behind, how the medical report said I needed meditation and participation in a support group for which I refused ans therefore I was non-compliant.

    i am the ine who has been asked to remove my shirt while the door was wide open so the dr could auscultate my lungs, and he missed a basal cell carcinoma found by chance months later. And 4months after resection it is bigger than what it was initially. (Recurrence)

    i came in with a horrible opened blistered rash on my foot at the clinic, bandaids were not big enough to cover them, and they could not actually be bothered to take scrapings or a swab to check out what it was, only to be told " it could be fungal, it could be viral, it could be bactarial or it could be food allergies". food allergies, really? Where did you hear that? She almost fell off her chair when I told her I didn't have food allergies. Even wheat.

    And then I came with a very sore ankle. You can perhaps imagine that medical problems for patients with ME are discounted by their own drs. i have had a sore ankle for months. the physician that saw me at the clinic said it was not necessary to do any kind of imaging on it, because it was likely chronic and nothing could be done about that. This is in the light of having a high ESR for a few months, and very High ANA titer. i over rode this and went bakcto my dr, and got a bone scan which was abnormal, and the CT scan last september was also abnormal. A follow up April CT scan showed worsening of the lesion on my ankle some effusion and the likelihood of a loose body in it.

    i am sorry but what I got was not medicine. i am deeply traumatized by my experience and while some people new to the diseases could benefit from getting a support group, what about the others who have been at it for 5-10-15-20 years and don't need to sit down in circle and sing songs and learn about meditation. i personally do not need to hear a lecture from naturopath nor am I interested to learn yoga. Moreover, my current situation prevents me from driving an hour and sit for 2hours and concentrate on what's being told, let alone on hearing BS after BS.

    i am a sick patient, I also happen to be an oncology registered nurse. i have paid into MSP (medical service plan) for quality care medicine and this is not what I've received. i am fighting for medical health care for ME and FM patients, not for a doctor who is preaching for meditation and naturopathy and 'healing yourself the matural way' like her recent cookbook preaches.

    Real patients= real medicine.

    Support groups for chronic illnesses already happen. The Arthritis Society 'living with arthritis' already does tht but there are other groups as well. Why dupplicate that and spend that precious money on that?
    Last edited: May 31, 2014
    Sidereal, Ecoclimber, NK17 and 2 others like this.
  20. Kati

    Kati Patient in training

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    And more to add, I hear from patients seen by Dr Patrick as part of the study that is currently going on have been treated much differently than the clinic. (As in treated much, much better). This should be food for thoughts. Patients who needed consultations with other specialsits were given a referral.

    The clinic should have had the ressources to send patients to other medical specialties faster, in my case, dermatology and rheumatology. They did none of that. i was seen at the clinic in July (with the open blisters foot) and saw the dermatologist at the end of November and he randomly asked to see my back after he saw the melanoma family history and found the basal cell ca right away. So the dr at the clinic, what was he looking at when auscultting my lungs with the door wide open and no shirt on?
    Last edited: May 31, 2014
    Aileen likes this.

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